We all have a few charities that we like to assist. Usually it's one we may have had to rely on, or a family member had to. Or a charity that we don't ever want to have to rely on.
I love the work that volunteers and charities do. Everyone wins with a charity. People who need it get help and people feel good for helping and our government taxes can be spent on other things, (like school chaplains and stuff).
Since my Dad died, the Leukaemia Foundation has been my charity of choice. They do good stuff and I strongly believe that blood cancer needs a great deal more funding, research and support. But if I had that much cash I think I would be a bit picky and want to tell them what they did with the dosh. I would want it to be spent on Amyloidosis. I would want it to be spent on medications that are available but that are not funded for Amyloid patients. There is nothing more hopeless than a life saving drug sitting in the fridge and the patient not having the cash to afford that drug, it happens every day in Australia.
My Dad's drug was $7000 a pop, he needed two a week. He was lucky and got on the right list, it was like a cruel joke when the doctor said "Yes! You have a double diagnosis, Myeloma patients get the drug, but Amyloid don't, but you have both diseases so you can get the medication!" We were strangely thrilled. It was hope, it was time, it was a possible time buyer.
Not everyone gets the double whammy. Other's are lucky to not be so sick. They need to wait til they are closer to dead to get the drug.
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| This is the current fundraising event for all Leukaemia sufferers. |
So my million bucks would be for a medication fund for Amyloidosis. It would ensure that those few unlucky souls who get such a shitful disease will have access to hope. Access to a medicine that might buy them time, that will buy them the hope they need to live positive days. It might not even last all that long. That much money might be gone in a year a two, or the drug might be cheaper or it might be replaced with another more effective, more expensive option. Who knows what might happen because medical miracles are happening all the time.
Which charity would get your cashola?
A very worthy cause, so sad to have to see your dad suffer so much. That price, wow, so ridiculous. The fact that the government doesn't help fund live-saving cancer treatments has always been a source of angst for me. I've interviewed so many cancer survivors, battlers and their stories are so gut wrenching. Hugs for your loss
ReplyDeleteI'm really sad about your dad. It is totally shit that these drugs are so damn expensive.
ReplyDeleteWhat a strange thrill as you said, to get the double whammy and the drug. Thank you, Claire, for this prompt and all that it got me thinking about. I feel very lucky and grateful.
ReplyDeleteMy Dad passed away from complications of Leukemia too (hugs) so many great charities need our help.
ReplyDeleteDid you see the recent law change in France as a result of one workplace donating their 'sick' days to a father whose son was battling cancer? People can be so kind. How good would it feel to be able to play the fairy godmother for all those patients needing that expensive drug? I hope they find some way to make it cheaper very soon.
ReplyDeleteGosh, such an expensive drug and not available to all, heartbreaking.
ReplyDeleteI would give the money to Bear Cottage, a children's hospice here in Sydney. A special place with special people.